Is it possible when you've come off the steroids for PMR that there are pockets of inflammation that remain and cause pain?

Post-PMR pain.

[PMRpro Ambassador]

A bit more detail would help. Is it PMR-type pain? Increasing? How long were you on pred, how long have you been off it?

Many people find they have some pain after stopping pred, some of it may simply be adrenal function slowly settling down, which can take up to a year for some people.

[Hidden in reply to PMRpro]

My problem is that no one has ever been quite sure if I actually had/have PMR. Pains in various places started about three weeks after shingles vaccination (Please note!). My inflammation markers which were tested twice were fine, but I've learnt from the forum discussions that there are many whose markers do not actually confirm inflammation. An MRI showed nothing except the usual ageing symptoms and X-rays the same. A huge number of blood tests which were all fine, apart from high uric acid because I'd stopped the medication - I've now been back on it for five months. So, by default almost, it was assumed that it was PMR, mainly because the pains were in the most frequently affected areas of the body - neck, shoulders, upper arms, buttocks, front of thighs and jaw. Three months of steroids - starting at 16mg per day for a week and levelling down to 1mg for three weeks at the end - during which I still suffered pain in various areas. I've now been off these steroids for two months but I still have pains in buttocks and thighs and weakness in right leg. I find it painful to put weight on this leg when I go upstairs. However, my lower back is also quite frequently painful (I've had back problems for years). And I wonder if the source of the pains isn't actually mechanical rather than systemic. I've seen a physiotherapist, an osteopath and a chiropractor but all give me only temporary relief. I think this may be because they have worked on the specific areas of pain rather than on the body as a whole and particularly my spine.

The question is do/did I have PMR or not? I saw a rheumatologist four weeks ago and he gave me steroid injections in the thigh and shoulder; they helped for a short time and the shoulder pain is better, but the weakness and pain in the right thigh and buttock remain. I'm seeing him again this week for a follow-up - but I've rather lost confidence that he'll be able to give me a correct diagnosis. That is why I joined this forum - PMR is such a difficult thing to pinpoint unless the pain is intense that I hoped I might get some help from your stories.

The first time I posted I got a rather abrupt response questioning the fact that I'd been on steroids for such a short time - I can only tell my story in the hopes of finding sympathetic, helpful suggestions. WhenI had breast cancer a few years ago I never dreamed of joining a forum of survivors because everyone with breast cancer knows what it is and what the prognosis is likely to be - whereas with PMR it is such a difficult disease to diagnose and make prognostications about.

This is basically why I joined your forum and read your contributions - in an effort to find out if I really did/do have PMR.

If you want my take on the matter (and I know so little about it and feel so much for your sufferings when I read about them) I believe that the shingles vaccination gave me possibly a mild dose of PMR, if there is such a thing, and that I'm still left with vestiges of the original inflammations.

Thank you to those of you who have responded so kindly to me in the past.

[HeronNS in reply to Hidden]

If you had Zostavax I believe PMR is a known side effect. Not sure about the newer one, Shingrix.And I concur - you still have pain because you still have PMR. However, did you have good relief at the very beginning, say after you'd been on your highest dose for three days or so? Did pain get worse as you reduced? I note you were at 16 mg for only one week. Generally speaking a PMR patient is to stay at that starting dose (provided it is helping) for at least a month and some doctors prefer up to six weeks. And then a very slow taper is begun to find the lowest best dose for keeping the symptoms under control.

[Hidden in reply to HeronNS]

Yes, it was Zostavax, which I think they've now taken off the market in the US. I've read up on this and, according to some Internet sites there are apparently court cases going on in America about getting PMR after this vaccination which is a live vaccine. The incidence appears not to be that common - I think 1 in 1000 . Apparently the new vaccine hasn't shown this side effect so far. I think I was put on a very short steroid course because my doctor wasn't sure if I actually had PMR, given that the blood tests showed no evidence of it. It was something of a 'by default' verdict!!

[HeronNS in reply to Hidden]

It was taken off the market not, I think, because of any danger, just that they've replaced it with the much more effective Shingrix, which is still not readily available in many other countries. Interesting about the class action however.

And the short course of pred, what did it prove? Sounds like it proved you have PMR. On the other hand if you hadn't experienced much relief, then it might have been something else, like fibromyalgia which doesn't respond to pred.

I had a number of other painful places, which I've since learned are common "add-ons" with PMR, such as a painful hip, which I thought meant I was on the road to a hip replacement, but x-ray at the time showed no sign of arthritis. And a painful sternum, which much later I realized was costochondritis, and didn't really go away until I'd been on pred for several years (very low dose). (That might even have been my first recognisable symptom of PMR, which means I had it far longer than I knew at the time.) The hip problem was resolved through physiotherapy for my back. So some of your aches and pains could be related to the fact you have PMR but not exactly PMR itself. PMR is, for example, the pains which mean such things as not being able to reach behind your back, or turn your head easily, or make it hard to stand up from a chair, or even to get out of bed. Those are common signs of untreated PMR. Not everyone has all those symptoms, and some people are even worse off, but you get the idea. Do your recognise yourself in that?

[Hidden in reply to HeronNS]

Thank you so much for all the time you spent explaining to me! Absolutely recognise myself in that!! Thought the same thing about hip but that’s fine according to X-rays.

[Uglow in reply to Hidden]

Did you have chemo for your Breast cancer! I think chemo saves you but leaves you with a multitude of other sins.

[Hidden in reply to Uglow]

No, I was fortunate; straightforward mastectomy without chemo or radiation to follow. I seem to remember that the malignancy was in a very difficult spot to access - this meant a lumpectomy wasn’t possible. So can’t blame PMR aches on that!!!

[Uglow in reply to Hidden]

Ok just checking ❤️

[PMRpro Ambassador in reply to Hidden]

PMR is listed as a possible adverse event with the Zostavax jab. What you describe does sound very PMR-ish - and actually a diagnosis of PMR should be a "by default" diagnosis by ruling out anything else it could be, which includes some cancers. A plain MRI won;t show much at all - but would rule out stuff. Same with x-rays.

I am sure - and a few research rheumies agree with me - that there is a form of PMR that is like reactive arthritis, developing in response to a trigger, but which then wears off fairly soon so that patients are able to get off pred in a short time, 20% get off pred in under a year it is found. The fact that you responded initially to pred shows you have a pred-responsive polymyalgic syndrome which is what the PMR we talk about here is - PMR isn't the illness, it is the name given to a set of symptoms and there are various underlying causes.

Something that is often found alongside PMR is myofascial pain syndrome - it can exist on its own but PMR makes it worse:

spineuniverse.com/condition....

You mention low back, buttock and thigh pain - piriformis syndrome as part of MPS leading to a trapped/irritated sciatic nerve would fit that. I get temporary relief from manual mobilisation of the trigger points by a physiotherapis - but since there is no cure for the underlying reason, in my case a scoliosis, over time it relapses. The PMR definitely makes it worse. The link is that they are both caused by the same inflammatory substances with them being localised in the muscle fascia and knots of hardened muscle fibres in MPS but are systemic in PMR. Pred often relieves it all at higher doses but the symptoms return as the dose reduces.

The inflammation in PMR can often be kept under control by a very low dose of pred - as little as 1mg a day can be plenty to clear out each day's dollop of new inflammation but no pred just lets it build up until you are back where you were. Think of it like a dripping tap filling a bucket - however slowly it drips, it will fill eventually unless you remove some water each day.

However strongly PMR starts, it seems to reduce in activity over time for most people so that they are able to reduce the dose of pred they need. Does that mean a low dose being enough also means it is mild? I don't know to be honest because there are a lot of patients, maybe as many as 40% who still require some pred after 10 years - but mostly at a very low dose. Mild, but chronic?

The relief you get with steroid shots might mean it is still the PMR - but equally, once under control again, you might be fine on 1mg oral pred. Which is negligible in terms of adverse effects but far safer than allowing a flare to develope, never mind the ongoing discomfort.

[Hidden in reply to PMRpro]

Not sure if my reply got posted, so I really want to thank you again for all the time and trouble you went to for me! I’ll let you know what the rheumatologist says on Friday! Thanks again - have taken the information on board!

[Dydee in reply to PMRpro]

Oh my gosh, this has been so informative!!! I have been struggling with the possibility of piriformis syndrome INSTEAD of that particular pain being part of my PMR and now I see that they can go hand in hand. I have a pain/spine doc who is anxious to do radio frequency ablasion (sorry about the spelling) to ease my pain but it just seems there are other ways to help me live a more normal life. The link you shared says just that.

I had gotten down to 8mg of Pred. but after about 8 days the back and hip pain got worse so went back up to 10 and now am down to 9 at least. But aching a bit. Has anyone tried acupuncture to ease their hip and spine pain? I am shopping for a jacuzzi, I think that will help a lot. LOL I've been on Pred now for 10 months, gained 16 lbs and even though I have gone gluten free and very low carbs for a month, the scale is still the same. So discoraged. I'm sure the new added weight isn't helping my back either.

😪

[SnazzyD in reply to Dydee]

It may be you need a very very low carb like I did. The only carb I had for many months was that found in root veg (not potato), a little fruit (mostly berries), two squares of dark choc a day, two small glasses of wine a week but no other sweet drinks. If you’re gluten free, does that mean you’re still having some carby foods or do you mean flavourings? I would also try for much longer than a month before judging. As my dose went down to below 5mg I could have a bit more.

[Dydee in reply to SnazzyD]

Actually I pretty much followed a modified KETO diet. Not nearly as much fat or protein as I think it is too hard on the organs. We have wonderful orange trees and even gave up my 6 oz of fresh squeezed orange juice and we use stevia exclusively for anything sweet, no wine, 1 sweet potato LOL, lots of low carb veggies, I think I had 1 apple but berries only in an occasional smoothie for dinner. At my age I guess I just need to give it more time. Just can't move enough to burn it off. Thank you for the pep talk, I will keep trying. Would love to see that 140 again. LOL

[SnazzyD in reply to Dydee]

It’s a drag isn’t it? Out of interest, have you had you blood sugars checked as in an HbA1c test? Also, fat and protein being hard on the organs, where did you hear that?

[Dydee in reply to SnazzyD]

I lose track of where I read info. LOL Spend so much time trying to make sure that any new diet or supplement is really safe and worth the effort. And yes, it IS a drag. I have so many other important things to occupy my brain. My last blood work showed my A1c a tenth of a point elevated. But it has been that way for several years.

[PMRpro Ambassador in reply to Dydee]

Are you sure you are as low carb as you think? Try keeping a food diary, weighing what you eat and working out the carb content. Often it is because people aren't adding it all up and they are unlucky like Snazzy and me who have to be almost keto to lose weight. And even a very little fruit or dairy other than cheese can contribute a lot.

But I also lose weight only very slowly - and even more depressing is that I get on the scales and have a lost a bit, only to apparently gain it back! I yoyo for a couple of weeks before suddenly I have got down that next small step. Since the beginning of Lent I have barely lost 2kg/4 1/2lb. In 2 months. Though to be fair, that is slightly faster than 6 years ago. But if you pile up that weight in the form of half pounds of butter it does look quite impressive!!

[Dydee in reply to PMRpro]

LOL That WOULD look quite impressive. And I do watch really closely, and have just plain stayed away from all gluten so NO bread, NO pasta and even have cut down on the amount of food I eat even though I am a pretty small eater anyway. Exercise would help but my low back has been so bad and MRI just shows a bit of arthritis, nothing to cause this amount of pain. Am going to a new Rheumy but can't get in until June 2 to see if it is possibly Ankylosing Spondylitis. Many symptoms fit.

I wonder if anyone has had the misfortune to have both PMR and AS? Geez, what next. Old age and retirement should be something to look forward to. LOL

[PMRpro Ambassador in reply to Dydee]

MRI doesn't show muscle problems ... It SHOULD have shown AS.

We have a few people who were diagnosed with PMR that turned out to be AS, I think it is more that AS can produce similar peripheral symptoms - PMR isn't the disease, it is the name given to a set of symptoms that can be due to a range of other MSK disorders as well as other things altogether.

[Dydee in reply to PMRpro]

Hmmm, that is good information. From what I have read about AS I sure hope that isn't my problem but would really like to know for sure what is going on. Pain specialist wants to get busy easing my back pain with injections and radio frequency ablasion but I'm not sure they can treat enough nerves to take away the pain. LOL

[PMRpro Ambassador in reply to Dydee]

There are now several biologics that work well in AS. A former member of one of the forums was diagnosed as having PMR but was never able to reduce pred well. She also had GCA-type symptoms, including some very unusual ones like necrotic areas on her tongue. She saw a few rheumies but they all um'd and ah'd. Eventually she travelled to Leeds to see Sarah Mackie who picked up on a throwaway comment about night time back pain, earlier in the night than is usual for PMR. Imaging showed AS. Naproxen worked - typical for AS but not for PMR. Then she was put on an anti-TNF drug which worked.

[Dydee in reply to PMRpro]

Thank You!! That is great info to add to my accumulation of notes. I need to have my doc double check my MRI to see if there is any sign there of AS. Hopefully not, PMR at least has the possibility of receding some day.

[DorsetLady PMRGCAuk volunteer]

Not sure how long you were on Pred, but from previous post it’s appears a very short time...so as PMRpro says need more info.

Just because you’ve stopped Pred, doesn’t mean you don’t have PMR - it doesn’t work like that.

PMR is a self limiting disease, so that means it comes when it wants and goes when it’s ready. So if it’s not ready and you stop Pred, it’s still there creating inflammation and causing pain